New Delhi: In 2012, a 30-year-old mentally challenged woman was molested by a cook in a government mental hospital in Kolkata. When the news spread and a first information report was filed, a group of women’s rights activists approached the hospital’s medical superintendent. His response was, “This girl used to run after all the male workers of this hospital. Mentally ill women usually cannot control their sexual urge. I am worried about my male staff."

In another case in 2000, a girl with hearing and speech impairment was raped in a prison van by two policemen in Kolkata. When a non-governmental organization approached the officer in charge of the police station, he said, “We do not mind helping you with other cases, but this is about a deaf girl. And we all know these people are more sexually active; it was she who started this...so, I cannot treat this case as rape."

These are not isolated cases. When it comes to sexuality, people with disabilities face a very ironic situation—on the one hand, society treats them as asexual, and on the other, people call them hypersexual. In South Asia, the sexuality of women in general is largely contained. The sexuality of disabled women is conveniently ignored—which activists claim has resulted in the denial of even recognizing their sexual and reproductive rights.

The demand for rights stems from the fact that people with disabilities, particularly women, have been subjected to sexual segregation, sexual confinement, marital prohibition and legally sanctioned sterilization—all under the guise of protecting the patient from sexual abuse.

“Almost 80% of women with disabilities are victims of violence and they are four times more likely than other women to suffer sexual violence," said a report submitted by Disabled People’s International (India) and its partners to the Committee on the Elimination of Discrimination Against Women (CEDAW) in September 2013.

As per Census 2011, the disabled account for 2.21% of India’s population, or 26.8 million people. Of these, 11.8 million are women. Disability activists say this count underestimates the actual number. The World Health Organization, which uses a wider definition of disability— including conditions such as diabetes and cardiovascular disease—estimates that 6-10% of the population suffers from identifiable physical or mental disability. This works out to more than 70 million people in India. There is hardly any data by the government on violence against disabled women.

When girls with disabilities reach puberty, parents look for ways to protect them from sexual abuse and unwanted pregnancy. Hysterectomy is often what they are told is the solution. This practice became public knowledge in India in 1994 when forced hysterectomies were conducted on 11 mentally challenged women between the ages 18 and 35 in Pune. Consent was obtained from the guardians and an irreversible surgery that was not medically recommended was carried out.

The practice continues with parents stealthily taking their daughters to hospitals and getting them sterilized without their consent.

As per UN Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care, 1991, consent must be “informed". It is the doctor’s responsibility to explain the benefits, risks and dangers, possible side-effects, chance of success and the consequences of performing and not performing the procedure as also all the alternatives to the patient.

But the situation on the ground is vastly different. “More than the fear of abuse, it is the fear of discredit that the pregnancy will bring to the families," says Nandini Ghosh, assistant professor at the Institute of Development Studies, Kolkata. “Most cases of abuse don’t happen in public places but inside homes, institutes, hospitals," she says.

At a Kolkata mental hospital, female patients were found naked in the ward in 2008, shocking a woman who had gone to visit her mother, a patient. According to hospital authorities, this was because their clothes had been sent for washing.

“Women in mental hospitals are dressed in loose frocks tied at the waist, oversized unisex gowns. They are forcibly tonsured or their hair cropped close to the skull. Patients are covertly discouraged to keep themselves clean and attractive on grounds that they could sexually provoke members of the male ward. Their treatment defeminizes them, dehumanizes them," says a report titled ‘Violence Against Women with Disabilities’ submitted to the UN Special Rapporteur Rashida Manjoo by Women With Disabilities India Network, national research trust Samarthyam and Human Rights Law Network (HRLN) in April 2013.

Even though it was the norm to not allow male and female cousins to sleep in the same room after they had attained puberty, disabled rights activist Anita Ghai who is herself a wheelchair user, remembers how she was the only child in the family who was allowed to share a room with her male cousins. “Then I used to think, I have some special privilege over other cousins…but when I grew up, I realized they thought I was asexual. Our bodies might not be beautiful but the inner desires are the same," Ghai says.

Ghai who conducts workshops on sexuality and is part of an online distance education programme run by feminist human rights organization CREA, says parents think it is a sin for their children with disabilities to masturbate and want easy solutions to stop them.

Since most information about sex is acquired covertly and is influenced by peers and the media, people with disabilities may experience limitations in knowledge and communication about sex and sexual behaviour due to their isolation from mainstream society, says Renu Addlakha of the Centre for Women’s Development Studies.

“Sex education programmes for the disabled have by and large targeted the mentally disabled who are regarded as particularly vulnerable to sexual victimization due to difficulties in general understanding and social judgement. But it is not only the mentally disabled who require special sex education programmes," writes Addlakha in ‘A Training Manual for Professionals Working with Adolescents and Young People with Physical Disabilities’ (2005).

“One needs to understand that persons with disabilities are mostly denied their sexual rights. But their biological needs are same as others. Sometimes, they do not know where and how to behave. For example, one can see adolescents with mental disabilities trying to masturbate in public—we need to teach them when and where this is acceptable," says Sruti Disability Rights Centre’s Shampa Sengupta.

The right to marry and have a family, on the basis of free and full consent, is a right enshrined in international human rights law and UN treaties to which India is a signatory. India is also a signatory to the Biwako Millennium Framework for action towards an inclusive, barrier-free and rights-based society. India has also signed and ratified the UN Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities. India as a signatory has full responsibility to ensure that persons with disabilities are not excluded.

In the health sector, women with disabilities require certain alterations in the present diagnostic and clinical approaches like wheelchair accessible mammography equipment or universally accessible exam tables. Activists say because they are invisible as a focus group, they remain excluded from gender-specific health programmes, health awareness, preventive health care, family planning services and sexual and reproductive health programmes. Women with disabilities are hardly referred for screening tests to prevent gynaecological or breast-related medical disorders. A World Bank study revealed that women with disabilities are 13-50% less likely to receive health care and assistive devices compared with men with disabilities.

In India, the landmark The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act was passed only in 1995. It defines a disabled person as one with not less than 40% of any disability as certified by a medical authority. The Act recognizes seven categories of disabilities—blindness and low vision, leprosy-cured, hearing impaired, locomotory disability, mental retardation and mental illness. In 1999, the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act was passed but it has limited scope.

Activists say much more is required. In April 2010, the ministry of social justice and empowerment finally constituted a committee to draft new legislation in line with the United Nations Convention on Rights of Persons with Disabilities (UNCRPD). A draft Bill was submitted to the ministry in June 2011 and included in a comprehensive section on the reproductive rights of disabled women. However, a revised version of the draft Bill completely cut down the sections on women and children with disabilities, with a passing mention that all programmes will be made sensitive to gender and children’s needs.

Ghosh of Institute of Development Studiessays, “Disabled people are always thought of as dependants and policies are made for people who can give back when you invest on them. Whatever progress India has made in these years is because of international pressure. That resulted in policy for livelihood and education among the disabled because these are the markers a country can use to show change to the outside world. Abuse, sexuality, reproductive rights have been put under wraps."

“The parts removed from the draft Bill need to be brought back because that will give the bill more teeth," says Seema Baquer, consultant on disability issues with Concerned Action Now. After the parts were removed, several organizations formed a coalition opposing this move. The group has sent recommendations to a Parliamentary standing committee, which was formed months after the Bill was stalled in the last session of the last government. All the laws and policies so far have been more or less gender-blind.

“If the Bill is passed in this form, the law would have failed to internalize the key message of the disability rights movement—that disability has to be understood from the perspective of a social model and that there cannot be discrimination amongst persons with disabilities," says advocate Jayna Kothari of the Centre for Law and Policy Research, Bengaluru.

To add to all this, adoption laws in the country have not been modified to enable adults with disabilities to adopt children in situations where the parents suffer from a genetic disability. And marriage and motherhood are almost a no-no for women with disabilities—in fact, much more than it is for men. Annulment of marriage on account of disability is a major factor for women with disabilities. There are more divorced wives with disabilities than husbands with disabilities.

In what several states conceived as a bid to encourage able-bodied people to marry people with disabilities, a scheme of incentivizing marriage with a disabled person was introduced first in 1994. The scheme paid a grant of ₹ 15,000 to a disabled spouse. The amount has been raised to ₹ 50,000 now and the scheme is operational in Goa, Karnataka and Andhra Pradesh.

“It is commodification of women. These men take the money, leave these women and then remarry," says Samarthyam’s Anjlee Agarwal.

Shanta Memorial Rehabilitation Centre’s Asha Hans agrees, “It is undignified. It hurts their self-esteem that people have been paid to marry them. It is like reverse dowry. Men take money and then leave them."

Disabled rights activist and director of National Centre for Promotion of Employment for Disabled People in India, Javed Abidi, says, “India has an ostrich-like approach. It’s ignoring this population at whose cost? You are not realizing that it’s an economic, a development issue. Disability is limited to being a charity and welfare issue."

Anita Ghai says it is a long fight—of not only pushing legislation or policies, but also changing the mindset in the country. “Before anything else, we need to be treated as normal human beings. If we are still denied accessibilty, how do we expect getting our sexuality rights? It is a long fight for me— for all of us. After all, personal is political," she says.